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A Challenging Post

I find one of the most difficult challenges about parenting a child with special needs is trying to find a work/life balance in a world where these 2 things don’t always want to play nicely together. I’m incredibly fortunate that my job offers flexible hours and it is a benefit that I value over any dollar figure. This has allowed me to be more involved with Lily’s day-t0-day care (therapy, medical appointments, etc) than if I was work a more tightly-scheduled job. And while I certain have chunks of time that are much busier and require my focused attention, in general the balance comes somewhat naturally.

When it does get difficult though is when parenting Lily actually requires 2 sets of hands; when you need a second person to unhook her feeding tube as she’s starting to vomit because otherwise it will get pulled loose as you’re trying to keep her from vomiting directly onto you and what little formula that is still in her stomach will leak out and be wasted. I’m not saying that 1 parent couldn’t do it alone. I’m in awe of the single parents who live this life – hell, I’m even in awe of Jess most days as she does it without me, but when Lily is sick and is literally vomiting up every meal before it’s even half way done, I’m grateful that there can be two of us.

It’s a different world though and sometimes difficult for people who aren’t living it to understand. I don’t always feel that my words can give a proper picture of what those days are like and how stressful doing it single-handedly can be. This is when my guilt sets in. Without actually living in my life, I can see how it may seem like having 2 parents at home is a luxury – an over-reaction, especially during the times when it comes along suddenly and I’m walking away from work under the guise of “vacation time,” to just be at home. It’s impossible to see the internal struggle that I feel between feeling the need to be at work and making sure my responsibilities are covered there, while being just as present at home where I’m needed just as much. Both parts of my life are important to me – I’m one of the lucky people in life who has been able to make a career from something I love, but at the same time, I know that family and my responsibilities here are always going to win out. And while I know that’s not unreasonable or beyond any expectation, I still can’t help but feel that pull – the one to convince people that I haven’t just blown off work for a week because being at home with Jess and Lily seemed better than being at work. In weeks like this, I would far rather be at work because it means that everything at home is running smoothly and there’s nothing happening that’s causing us to worry, or anything going on that needs the extra support. What’s almost amusing about this is that, when Lily was smaller, we were getting some funding for some respite – so that during times like this, we could actually bring in some extra help instead of having me leave work. But, since Lily was smaller and not as active, it was easier for a single parent to take care of situations like this. But now that she’s older and has made so many developmental and motor gains, but fewer communication gains, we could use the respite, but don’t qualify for any of the funding.

When Lily is sick, we struggle to figure out where the cycle is happening: Is she crying because her stomach is upset and that’s what’s making her vomit, or is she vomiting because she’s crying so hard? With almost no verbal communication skills, we’re at a loss for trying to get to the bottom of it: she can’t tell us that her stomach hurts and so we’re constantly watching for other clues – anything that will give us even the smallest hint of how to try and break the cycle. Because we don’t have the ability to communicate with her, treating her symptoms is almost a guessing game. We start with one idea and then keep rotating new methods in or out until we find something that seems to do the trick: suction her nose before each meal, try gripe water or tylenol to help with pain, replace her formula with electrolytes so that she’s at least staying hydrated (but then causes us to worry about her calorie intake), or slow the rate of her feed down so that her stomach doesn’t feel like it’s being force fed (which then causes the problem of getting enough calories in for the day). At one point this week we actually considered dividing the amount of formula for each feed in half and doing 8 very slow feeds instead of 4 very very slow feeds, but a very slow feed takes at least an hour, which means she would literally be hooked up to her pump continuously, and since she needs to sit still while she eats, we realized this wasn’t even a remotely feasible option. So instead, one of us will snuggle up with her on the couch (because she’s sick and just wants to be held), and hang out there for the full hour, ready to jump when she starts to vomit. All while the other person takes care of the rest of our lives: laundry, meals, medications, basement and backyard renovations, and staying close enough to be that second set of hands or to take her once the meal is over, because at that point the mom on the couch has to take a bathroom break. Beyond this is just our general anxiousness when her illness is respiratory, as we’re constantly watching for signs that it’s not progressing into anything more serious: we’re watching her breathing, the colour of her nail beds and lips, we’re worried that we’ve missed something and the vomiting is actually a sign of heart failure. Sometimes the stress alone is enough to needs both mom’s around, so that one of is always calm in case the other one is freaking out.